Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hi : I will try to answer your questions to the best of my ability, forgive me if I babble, I will try to keep to the point. I was dx in 1986 even though the symptoms of something being wrong surfaced many years prior to my dx of PLS. When I was finally dx by the Lahey Clinic just outside of Boston, and heard the words " similar to ALS or Lou Gehrig's disease, my husband and I were devastated and scared. The doctor told us, that PLS was not life threatening, and that there was no treatment or cure, just to keep walking and listen to my body and not get overly stressed. He also thought that my PLS surfaced because of stress, and believe me I had a great deal of stress at that point in my life. He put me on Baclofen, and the rest is history. I acquired a neurologist here in NH and he was on the same page as the doctor who dx me. I have never run around looking for the " magic pill " that was going to make me better, I just accepted my dx and learned to live with it. And thank God I have a wonder caring husband and family who makes my life very easy. I don't do anything that I can't do, regardless how manual the task. I have never worn shoes that caused me to fall (and they did in the beginning). I used a walker for balance and when it was time for a wheel chair (manual) I used it, till I couldn't push it any longer on my own. I have now an electric chair (no I am not in it all the time). I have a lift chair as weakness in my legs has always been a problem from day one. I still drive, and have a van that has been converted to suite my needs. I think m age has plenty to do with my progression a combination of being 70, aging and a wee bit over weight. We have bought and sold two homes, and now reside in a handicapped senior citizen complex where we manage the building. So life has been good for me, and I really can't complain. I do believe there are different degree's of PLS, some worse then other, don't know why, but attitude and stress free lifestyle (not always easy) really helps. I sure hope I have answered some of your questions, so if there is anything else I can help you with just ask away. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hi Rita, I do have another question for you. During all the years you have had PLS have you had any GREAT falls that you had to be Hospitalized or broke something or bruised up? Just wondering what I might expect for the future. Thanks so much for writing me back. Rita Diclemente mamadee1@...> wrote: Hi : I will try to answer your questions to the best of my ability, forgive me if I babble, I will try to keep to the point. I was dx in 1986 even though the symptoms of something being wrong surfaced many years prior to my dx of PLS. When I was finally dx by the Lahey Clinic just outside of Boston, and heard the words " similar to ALS or Lou Gehrig's disease, my husband and I were devastated and scared. The doctor told us, that PLS was not life threatening, and that there was no treatment or cure, just to keep walking and listen to my body and not get overly stressed. He also thought that my PLS surfaced because of stress, and believe me I had a great deal of stress at that point in my life. He put me on Baclofen, and the rest is history. I acquired a neurologist here in NH and he was on the same page as the doctor who dx me. I have never run around looking for the " magic pill " that was going to make me better, I just accepted my dx and learned to live with it. And thank God I have a wonder caring husband and family who makes my life very easy. I don't do anything that I can't do, regardless how manual the task. I have never worn shoes that caused me to fall (and they did in the beginning). I used a walker for balance and when it was time for a wheel chair (manual) I used it, till I couldn't push it any longer on my own. I have now an electric chair (no I am not in it all the time). I have a lift chair as weakness in my legs has always been a problem from day one. I still drive, and have a van that has been converted to suite my needs. I think m age has plenty to do with my progression a combination of being 70, aging and a wee bit over weight. We have bought and sold two homes, and now reside in a handicapped senior citizen complex where we manage the building. So life has been good for me, and I really can't complain. I do believe there are different degree's of PLS, some worse then other, don't know why, but attitude and stress free lifestyle (not always easy) really helps. I sure hope I have answered some of your questions, so if there is anything else I can help you with just ask away. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Hey , Just wanted to throw out my 2cents about falls......it only takes one. I had fallen millions of times prior to one large fall i had that didnt' require hospitalization, but certainly took away my use of my left leg and therefore making it atrophy while sitting in this chair. It is still smaller and there is more pain in foot, ankle, knee from that fall (it was a twist and shout kinda fall, feet under power chair, knee hitting bar on couch). I really couldn't stand but was trying to do so leaning legs back on my chair. my moral, please take great caution to avoid falls as best you can. you don't want setbacks before it is time. i tended to try to do things that i had absolutely no business doing and all because i was proud and well stupid in retrospect, about my limitations. Tawny email from Tawny Swain Castle, Florida Re: /nc Hi Rita, I do have another question for you. During all the years you have had PLS have you had any GREAT falls that you had to be Hospitalized or broke something or bruised up? Just wondering what I might expect for the future. Thanks so much for writing me back. Rita Diclemente wrote: Hi : I will try to answer your questions to the best of my ability, forgive me if I babble, I will try to keep to the point. I was dx in 1986 even though the symptoms of something being wrong surfaced many years prior to my dx of PLS. When I was finally dx by the Lahey Clinic just outside of Boston, and heard the words " similar to ALS or Lou Gehrig's disease, my husband and I were devastated and scared. The doctor told us, that PLS was not life threatening, and that there was no treatment or cure, just to keep walking and listen to my body and not get overly stressed. He also thought that my PLS surfaced because of stress, and believe me I had a great deal of stress at that point in my life. He put me on Baclofen, and the rest is history. I acquired a neurologist here in NH and he was on the same page as the doctor who dx me. I have never run around looking for the " magic pill " that was going to make me better, I just accepted my dx and learned to live with it. And thank God I have a wonder caring husband and family who makes my life very easy. I don't do anything that I can't do, regardless how manual the task. I have never worn shoes that caused me to fall (and they did in the beginning). I used a walker for balance and when it was time for a wheel chair (manual) I used it, till I couldn't push it any longer on my own. I have now an electric chair (no I am not in it all the time). I have a lift chair as weakness in my legs has always been a problem from day one. I still drive, and have a van that has been converted to suite my needs. I think m age has plenty to do with my progression a combination of being 70, aging and a wee bit over weight. We have bought and sold two homes, and now reside in a handicapped senior citizen complex where we manage the building. So life has been good for me, and I really can't complain. I do believe there are different degree's of PLS, some worse then other, don't know why, but attitude and stress free lifestyle (not always easy) really helps. I sure hope I have answered some of your questions, so if there is anything else I can help you with just ask away. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Hi Cary, i've had many falls, many upsets in my wheelchair, many tipovers on my scooter. the worst was about a month ago. I was in the house, i woke up the clock said 4am, so i got up to let the dog out. using my canes only i took about 14 baby steps and feel backward and to the left onto my grandsons step stool. the only thing that hit it was my ribs. Cracked three ribs and brused my hip was at the VA Emergince room at 4;45am did not see dr. until 8am and i was the only one in their. The worst part is when you sneez Man do it hurt. > Hi : > > I will try to answer your questions to the best of my ability, forgive > me if I babble, I will try to keep to the point. I was dx in 1986 even > though the symptoms of something being wrong surfaced many years prior > to my dx of PLS. When I was finally dx by the Lahey Clinic just outside > of Boston, and heard the words " similar to ALS or Lou Gehrig's disease, > my husband and I were devastated and scared. The doctor told us, that > PLS was not life threatening, and that there was no treatment or cure, > just to keep walking and listen to my body and not get overly stressed. > He also thought that my PLS surfaced because of stress, and believe me I > had a great deal of stress at that point in my life. He put me on > Baclofen, and the rest is history. I acquired a neurologist here in NH > and he was on the same page as the doctor who dx me. I have never run > around looking for the " magic pill " that was going to make me better, I > just accepted my dx and learned to live with it. And thank God I have a > wonder caring husband and family who makes my life very easy. I don't > do anything that I can't do, regardless how manual the task. I have > never worn shoes that caused me to fall (and they did in the > beginning). I used a walker for balance and when it was time for a > wheel chair (manual) I used it, till I couldn't push it any longer on my > own. I have now an electric chair (no I am not in it all the time). I > have a lift chair as weakness in my legs has always been a problem from > day one. I still drive, and have a van that has been converted to suite > my needs. I think m age has plenty to do with my progression a > combination of being 70, aging and a wee bit over weight. We have > bought and sold two homes, and now reside in a handicapped senior > citizen complex where we manage the building. So life has been good for > me, and I really can't complain. I do believe there are different > degree's of PLS, some worse then other, don't know why, but attitude and > stress free lifestyle (not always easy) really helps. I sure hope I > have answered some of your questions, so if there is anything else I can > help you with just ask away. > > Rita > > Quote Link to comment Share on other sites More sharing options...
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